Being referred to neurosurgery is perhaps one of the most frightening experiences anyone can have in a hospital. There are a myriad of concerns that patients may have before going under for brain or spine surgery, from general fears of anesthesia to imagining all of the possible cognitive and physical side effects. The neurophobia that exists among many medical students and young physicians certainly doesn’t help either: learning to master neuroanatomy and diagnostic reasoning in neurology and neurosurgery can be quite intimidating. Furthermore, the complexity of the field’s terminology may engender unease in aspiring physicians. 

In fact, unfamiliar medical language is a common source of anxiety in patients and their families as well. An ethnography of a genetics clinic found that the use of certain medical terminology may influence the emotional interpretation of a patient’s situation. For example, the word “syndrome” used in conjunction with a patient’s diagnosis frequently conjured thoughts of Down’s syndrome, which many families had some knowledge of. Coupling “syndrome” with their preconceived notions of Down’s syndrome led many families to re-imagine their child’s condition based on their own idea of what a “syndrome” might look like, when in reality the term is used to describe a collection of symptoms in medical lingo. Likewise, in neurology and neurosurgery, hearing the word “tumor” may immediately orient one’s thoughts around cancer and evoke associated fears of the diagnosis, treatment, suffering, social consequences, and death. 

But is every word in the neuro dictionary cause for trepidation? While I was shadowing in pediatric neurooncology and general neurosurgery clinics, there have been a fair share of scary cases with equally scary names – such as a patient with a golfball-sized hole in the forehead from a Langerhans cell histiocytosis (LCH), and a patient left without cerebral hemispheres from hydranencephaly. Not to mention, there isn’t a world in which one hears “cancer” without a shiver going down their spine. Nevertheless, I heard the names of many conditions that – to my undergraduate-level brain sounded serious – were less worrisome than one might have expected. 

Many patients in the clinics did not have diagnoses that were foreshadowed by alarming symptoms – rather their findings were incidental. In neurooncology clinic, for instance, some of the most common cases are pituitary and pineal incidentalomas – a title aptly given to lesions that are discovered by chance when an MRI is ordered for reasons such as migraines or a minor head injury. I remember the first time I was shown one such incidentaloma: a tiny dot sitting by the pituitary gland. One cross-sectional study has shown that these incidental findings are common in the general population and their prevalence increases with age, however the vast majority were not clinically significant nor were they associated with psychiatric, cognitive, or behavioral conditions. Incidentalomas, it seems, exemplify how sometimes the medical jargon is scarier than the diagnosis.

That is not to say, however, that there aren’t benign diagnoses that do look frightening in a scan. I was with clinic staff about to see a patient with an arachnoid cyst in the posterior fossa (lower back of the head) that was detected in a prenatal scan. I was reassured in advance that the cyst was benign and that the patient was asymptomatic – just a follow-up was required. When the scan was pulled up, I was stunned: there was a brightly lit mass sitting on the patient’s cerebellum. I was even more amazed at the composure of the patient and family (surely they had seen the visuals of the cyst before in earlier scans). It was at that moment that I really began to appreciate the power of effective communication. If I were the patient and my parents and I were shown that scan for the first time with the name “arachnoid cyst,” I am sure that my mother would have fainted: “arachnoid” indeed brings to mind spiders – with arachnophobia being a common phobia – yet most non-medical people probably wouldn’t know that the arachnoid mater refers to the middle layer of the meninges that has a spiderweb-like appearance. 

The medicalization of certain physical characteristics (that aren’t necessarily abnormal) made me ponder another source of patient anxiety – not just in neurosurgery, but across the entire medical field. One study used mild mitral valve prolapse (MVP) as a case example of a medicalized variant that overlaps substantially with normal anatomy and physiology, cautioning healthcare professionals against describing the condition as if it were a dangerous disease. When there was a case of macrocephaly in the neurosurgery clinic, I was immediately intrigued: there was a patient with a head circumference in the 99th percentile. I am not entirely sure what I expected to see, but sitting on the exam table was a seemingly normal baby with a head proportionate to their body. The parent was unfazed as well, as macrocephaly was a common finding in their family. Strange, I thought, how the medicalized term for “big head” can have drastically different connotations: it can refer to someone with a big skull and more brain tissue that is completely benign, or it can be the physical manifestation of hydrocephalus, a more serious condition. Even my own expectations were influenced when I heard “macrocephaly” as opposed to “above average head circumference.” 

The patients have every reason to be afraid when they learn the name of their conditions, which is almost always presented in the foreign language of medicine. Yet I have observed how the doctor-patient interactions have greatly contributed to mitigating any concerns, especially in the nonsurgical cases where there is less to fear. Pediatric neurosurgery, a field that neurophobic medical students are scared of, and that no parent wants to see their child referred to, seemed very approachable as a result of the openness and transparency of the staff in their clinics.